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Travel after Spinal Cord Injury: Finding your Comfort Zone

March 8, 2011

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Report: Travel after Spinal Cord Injury: Finding Your Comfort Zone

Three individuals with spinal cord injuries talk about their experiences traveling after injury and share tips for making travel successful. Presented on March 8, 2011 at the University of Washington Medical Center.

Contents

Know what you need, and ask for it

Portland, Oregon resident Caren Van Kleek sustained a C5-6 incomplete spinal cord injury 19 years ago. Three years ago she started All About You Travel, which specializes in travel for people with disabilities. The key to successful travel for anyone, she said, but especially for people with disabilities, is to plan ahead and ask lots of questions.

When researching hotels, don’t just ask if a room is accessible. “Focus on your specific needs,” she advised. “Do they have any rooms with roll-in showers? Can they provide a shower chair? Do they have a hand held shower? What are the dimensions of the bathroom?” You need to be able to get your wheelchair in it and turn it around. Don’t forget to ask the hotel how wide the doorways are. Know all the dimensions of your wheelchair so you can find out if your chair will fit.  

Ask about the height of the bed and the amount of space between the bed and the wall. “One of the best people to talk to is the head of housekeeping,” Caren said. If the bed is too high, talk to them about options.  “Ask to talk to someone in the hotel’s engineering department, because they can be your very best friend,” she added.  For one of her clients, the engineering department removed the Hollywood bed frame to lower the mattress height. You can also ask the hotel to take pictures of the room and email them to you so you can get an idea of the layout.  

Once you’re actually at the hotel, don’t hesitate to ask for help. For instance, extra chairs or tables in the room can just get in the way. If that’s a problem, call the front desk and ask them to remove some furniture so you can maneuver around the room more easily. You need to advocate for yourself every step of the way.

Chris Curtis agrees that asking for help—all the while staying pleasant and upbeat—goes a long way toward making travel comfortable and enjoyable. Curtis has a C5 incomplete spinal cord injury, uses a manual wheelchair and has traveled extensively domestically and abroad since his injury 5 years ago.

“I've traveled to Switzerland a few times,” he said, “and I've traveled around the US with my rugby team. That's always an adventure because you have about 10 guys in chairs traveling at the same time. There's all sorts of confusion as to how to transfer everybody onto a plane, how to get all the equipment off the plane, whose chair belongs to whom, and so on.”

“Being a self-advocate is extremely important,” he continued. “Always speak up for yourself, even if  you’re traveling with someone else and it seems easier to let your companion do all the arranging. You know better than anyone what you need, and just always keep a great attitude about things.  Nobody wants to make it difficult for you.  If you smile and you're nice to them, they will bend over backwards to make sure that you're comfortable.” 

 “Give yourself a lot of time with the transporters,” he added. “Often they are not native speakers of whatever country they are working in, and they generally don't deal with people who have severe disabilities. You have to walk them though the lifts and transfers. And often you have to repeat it in many different ways and maybe show them if there is a language barrier. And maintain their attention, because I noticed at the London Heathrow for instance, they wander off very easily. And here in Seattle, in the International side, they have a tendency to be on their cell phone all the time. So it's good to keep talking and constantly be engaged with the individual.”

 Joe Meyer sustained a C4 incomplete spinal cord injury six years ago. He lives with his wife and two young daughters. “In the 6 years since I've been injured, I've probably flown 5 or 6 times around the country on a variety of airlines and have been generally pretty happy with the them.” But it can be unpredictable, and you need to anticipate problems.

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Once an airline lost his wheelchair. Another time the airline lowered his chair onto the airplane on its side, damaging the armrest. “The airline replaced it a few months later, he said. "But all in all, I think the airline people are very helpful.”

Joe travels with his wife. “She doesn't get much of a vacation, unfortunately, because she becomes my caregiver.” It’s a good arrangement for him, however. “I don't have to worry so much about transferring myself or having a proper shower chair or whatever it may be, because my wife can make up the difference just by being there to help out.” 

In general, Joe feels it’s always a good idea to get advice from other people with SCI who have traveled. “One of the people I met when I was injured told me a few basic things about how he traveled, and suddenly you realize you can.” 

Everyone is unique when it comes to what you need for traveling, he said. “There are certain shortcuts we can take, and there are a few things we’ve come up with to be inventive. For instance, luckily, one positive outcome of my injury is, I don't sweat and I don't stink, so I don’t need to have a bath that often. I can go for a week without a shower and it's not a problem. Who cares about having a shower chair if you're not going to take a shower? It works; trust me, my wife would tell me if that weren’t the case. Another example: just to be a little bit crude, a garbage bag, a grocery bag, and a waste paper basket—you have a toilet, if necessary. You can make things work.”

“I don't worry that much about getting a handicapped accessible room," Joe said. "I just want a room I can roll into and get to the bed and the bathroom. That's pretty much all I need from a room. But again, that's me.”

Although Chris doesn’t usually check ahead to get details about a room’s accessibility, once he arrives at the hotel, “I will ask to see the room before I check in, to see if the bathroom works for me." For instance, on a recent trip to Portland, the room he reserved had a bathroom that was too tight to maneuver in. “I asked them if they would take the door off, and generally they'll do that, but this hotel wouldn’t.” He ended up switching to a different hotel.

“Accessible rooms are sometimes less accessible than the non-accessible rooms,” he added.  “Especially if you're traveling with a commode seat that goes on top of the toilet. The accessible rooms often have a high toilet seat, and adding your commode seat on top makes it too tall.”  So if you haven’t called ahead about these things, “just take a look,” Chris suggested. “If the room's not going to work for you, ask to look at a different room.”

Same thing with the bedding.  “I stayed at this one place and the room they showed me was really nice, but it had a Tempur-Pedic mattress. This doesn't work for me—it feels like I am lying on concrete and adds pressure to every part of my body. Plus, when I tried to move on it, I just sank in. So I had to move to a different room.” 

Regarding supplies, “Try asking for a transfer bench. Or you can make phone calls ahead of time to the ALS Society or the MS Donor Closet in the city that you're going to and see if they can loan you a transfer bench or some equipment that you can pick up while you're down there. One day is about as long as I want to go without a shower.”

When booking accommodations, don’t assume that all the rooms in a hotel chain will have the same features or dimensions in all its franchises and cities, Chris said. “Some chains are more uniform than others.”

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Caregivers

Many people are reluctant to travel because of the extra expense of taking a caregiver along. “I haven't done it yet, but I have definitely considered hiring or taking my current caregiver along with us,” Joe said. “I feel bad when we travel because my wife has to work so hard taking care of me and the kids, so she doesn't get a lot of vacation.”

“My sister lives in Illinois,” Joe continued. “She happens to be a rehab psychologist working in a hospital there. I’m thinking about visiting her this summer, and she has talked to a few people there who would be happy to come in and help out and give my wife a break while we’re visiting.”

Caregivers can also come from agencies in the city you’re traveling to and can be arranged in advance. Likewise, medical equipment such as a Hoyer lift can also be ordered in advance and delivered to your hotel room. Joe prefers using pivot transfers. “I can't imagine trying to deal with a Hoyer lift on the road,” he said. “I'm a huge advocate of learning to do manual pivot transfers. I train all my caregivers how to do it.  My current caregiver is 5 feet 2 inches and 105 pounds, and I'm 210 pounds, and she transfers me all the time, three times a night actually when we do a full shower night. So, think about learning to do manual transfers.”

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Handling the unexpected

No matter how well you plan, things can go wrong. Joe’s story of the airline losing his wheelchair is amusing now, but at the time it felt like a crisis. He was traveling to San Diego with his family, with a stopover in Salt Lake City.  “I'm guessing that my chair went on last so it came off first when we landed Salt Lake,” he said. “And they didn't put it back on the plane. We landed in  San Diego, and my chair just wasn’t there.”  Inexplicably, the airline put the chair on a flight to Portland. The airline supplied him with a wheelchair right away—not a good one, but he was able to make do for a short while—until his own chair arrived the next afternoon. “They were very good about it,” he said of the airline. “It wasn't great, but it all worked out about as well as it could.” As compensation, the airline gave his family several hundred dollars’ worth of vouchers for future air travel.

When an airline broke Chris’ wheelchair, “they were very good about it and paid for repairs right away.” On another trip, Chris was thrown from the transporter chair while being pushed by airline staff along the jet way. He wasn’t hurt, but “a lot of panic ensued, with people running around trying to get me back in the chair as fast as possible. I had to get everybody to stop rushing around and start listening to me.” Once he got their attention, he was able to reassure them that he was fine and give them instructions for getting him back in the chair.

Joe agreed that airport personnel are often in a rush to help you. “You have to slow them down and tell them clearly, ‘this is how it’s going to work. This is how it works for me.’”

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Hauling the gear

“I pack a lot of stuff because I require a lot of stuff,” Joe said. “We have a big long list, including what I might need for contingencies. We bring a set of tools. If there's a chance you might need something and you're not going to be able to get it on the other end quickly, you probably want to take it with you.” Airlines don’t charge luggage fees for durable medical equipment, like a portable shower chair.

Make  sure you have extra supplies and medications on board with you in case you’re stuck in the airport for a day without your luggage, Chris said. “Put it in a backpack to carry on. Airlines are a little more lenient with us as far as how many bags you can carry on.”

Joe agreed: “If it’s really important, don’t check it!”

When Chris goes on a long flight, he carries an extra cushion. “I have the flight attendants remove the airline's seat cushion and I put the ROHO on the base platform. It's a lot more comfortable, it’s better for your skin, and it doesn't raise you up 4 inches higher like it would if you put it on top of the airline seat cushion.” 

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Your Health

Deep vein thrombosis is a risk for everyone on an airplane, Chris said, “so you definitely want to be moving as much as possible and stay hydrated. Stretch, move your legs around or have somebody move your legs. If you’re flying alone, the flight attendants can help. Especially if you’re on British Airways, they are the best people ever –they’ll  help you move your legs around; they'll rearrange things; they'll bring you bottles of water instead of glasses of water. If it’s a long trip, use an indwelling catheter so you can maintain your hydration.”

It’s also a good idea to take prescriptions for all the medications you are taking or might need along with you when you travel, Chris added. “Just in case you accidentally knock over all your meds and they get flushed down the toilet or you want to stay longer than you anticipated. And if you’re prone to UTIs, carry a prescription for an antibiotic that works for you.”

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Ground Transportation

“When we travel we usually rent a van to the tune of about 100 bucks a day, maybe 90 if you rent it for a week,”  Joe said. For their trip to San Diego, however, they stayed in a hotel that was close enough to walk/roll to Sea World."For anything else we did, we just took public transportation. I'm really happy and comfortable with the public transportation system here in Seattle. So when I knew we were going to San Diego, I got on their transit website, looked at where the lines were from point A to point B, and planned it all out.”

When Chris travels to San Diego to visit family, he calls a rental agency ahead to order the car and request hand controls. “They can put hand controls in pretty much any car,” he said.  “Any mid- to full-sized car seems to work pretty well for me to be able to get in and out. I've used a Chevy Malibu, an Impala and the new Camaro. Make sure you bring a transfer board if you’re transferring yourself, because sometimes the gap between your chair and the car seat can be a little bit greater than you might expect.”

“In Europe I've used public transportation,” Chris said. “The system in Switzerland was pretty good. The buses all had ramps, which were folded up behind the driver, who unfolds it, sets it down, and then pushes you up the ramp because it was about a 45 degree angle. But, it worked.”

The newer trams throughout most of Northern Europe are generally like our Light Rail here (in Seattle), Chris said. “A ramp comes out at sidewalk level, and they're pretty accessible.” He has found trains in the U.S. to be accessible, but hasn’t tried trains abroad.

Accessible ground transportation may be available even in the most unlikely places, as Caren learned while planning for a Caribbean cruise. “The cruise accommodations people said there was no accessible transportation on the island of Saint Thomas,” she said. “So I went online and googled ‘Saint Thomas wheelchair accessible transportation’ and found it and booked it ahead of time. So don’t take no for an answer.”

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Resources

 

SCI Travel Checklist (what to pack and where to pack it)

 

Airline Travel Tips for People Using a Wheelchair

 

One SCI Consumer's Travel Philosophy

 

Accessible Travel Information & Resources

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Travel  and Tour Companies

Transportation Companies

Accessible Van Rentals

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